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Thread: Hello, I'm new to this forum!

  1. #1
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    Hello, I'm new to this forum!

    My name is Jenson and I am getting things (insurance) squared away so I can undergo this scary, necessary surgery. I am 56 and married to a wonderful man that encourages me daily to do the best I can. I have a double curve T4-11= 50 degrees, T11-L3 =78 degrees, L4-5 laterolisthesis = 8mm, trunk buckling to the right by 2.4 cm. Also Kyphosis measuring 67 degrees and Lordosis measuring 45 degrees. I have pain almost constantly and I've met with a scoliosis surgeon but would like to know if anyone has seen any surgeons in North Carolina??
    As afraid of the surgery as I am, I am equally afraid of what is happening in the last 2 years to me and what will happen if I don't. My spine has twisted as it curves and I have declined greatly due to degenerative disc and facet arthritis making things much worse.
    I have loved reading about the successes of many of you and hope for better days for those still suffering setbacks.

    Have the best day possible!

    Jenson

  2. #2
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    Quote Originally Posted by jborden View Post
    I am equally afraid of what is happening in the last 2 years to me and what will happen if I don't.
    Ahhh....the big question.

    I battled degeneration for years and at the end (Age 49) things pretty much fell off a cliff. Nothing was helping and the pain was relentless. It was like battling a fire, when it gets out of control, there is not much you can do.

    If I were in North Carolina, I would talk to Dr Hey. Remember that you don't have to make a decision right away just because you visit with any surgeon, think of it as going in for a talk, and getting your feet wet. I had 2-1/2 years of discussions with my surgeon before I finally set my date. Get his assistant's e-mail for answering any questions, this is the choice form of communication.

    It might not be a bad idea to ask for an NSAID to hold you over....you can also do this through your GP if you have not done this already. Something like Diclofenac, Celebrex....These are our fire extinguishers for pain. Hot water soaks also work well for pain, and its our easiest and cheapest pain solution.

    Welcome to the forum.

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  3. #3
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    Here is Dr Hey's You Tube Link
    https://www.youtube.com/channel/UCE4...FsEHBFOoujw5Fw

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  4. #4
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    Welcome Jenson! How I wished that each of us could have a crystal ball and could see 10 years into the future for our lives both having and not having surgery. The decision on what to do would be obvious.
    I encourage you to keep a daily journal now of your pain and activities that you can and cannot do. That is helpful as we tend to forget how badly we felt pre-op when we are faced with challenges postop.
    Best of luck!
    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  5. #5
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    Thank You!

    Quote Originally Posted by titaniumed View Post
    Thank you Ed!
    I had a consultation with Dr. Hey and was very comfortable with him but needed the reassurance that my desperation wasn't clouding my judgement and I was on the right path. It is difficult to drown out the many years of doctors saying no one locally would touch my back and it isn't worth risking paralysis.... The fact that my aging spine with degenerative disc and arthritis just keeps getting worse (like an accordion) has forced me to look for help. Looking at the you tube videos you sent has really given me confidence so thank you again.
    I was forced to go on disability a few months ago because the pain of standing or sitting for a period of time and inability to concentrate was making it impossible. I was a Mortgage Loan Officer and I miss it and hope to return at some point. So I am trying to get things lined up insurance wise and will hopefully be at a point to move forward this fall with surgery.
    Did you have a lot of nerve pain prior and did that go away?

    The support on this site is wonderful and I am thankful to have found this forum.

    Take care!!!

    Jenson

  6. #6
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    Hi Susan

    Quote Originally Posted by susancook View Post
    Welcome Jenson! How I wished that each of us could have a crystal ball and could see 10 years into the future for our lives both having and not having surgery. The decision on what to do would be obvious.
    I encourage you to keep a daily journal now of your pain and activities that you can and cannot do. That is helpful as we tend to forget how badly we felt pre-op when we are faced with challenges postop.
    Best of luck!
    Susan
    That is a really good suggestion Susan. I think it would be very helpful to realize how limited you were and be able to realistically gage your improvement/ success.
    Did you have surgery and if so when? If yes, are you better now?

    Thank you,

    Jenson

  7. #7
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    Jenson, Glad the videos helped some. I see you need to get your ducks in a row.....we all need to do these things.

    Nerve pain? ......You mean herniated discs protruding on the spinal cord? They have a habit of aiming towards the spinal cord, that they do well. I have had 6 diagnosed in my time, 4 in my 70 degree lumbar curve that forced me into scoliosis surgery, and 2 cervical C5-6, C6-7) that was alleviated through medications. I consider both miracles.....This kind of pain is in a different elevated alarming category, stubborn things to have to deal with. I battled the 4 lumbar herniation's for around 6 years, taking Celebrex, and Bextra. (The latter now blacklisted) I had a good excuse to go to Hawaii and scuba dive on each pain event. I thought it was a good excuse! I miss those emergency dive trips to Hawaii.....I came so close to checking into the hospital in Kona many times. I never did because it would have been way too complicated.....When you have a toothache, you need a dentist. When you have maximum scoliosis pain in Kona, you dive, that's it. Ha ha
    (There "is" a scoli surgeon in Honolulu BTW)

    I had the classic sciatica, leg pain where it felt as if a horse kicked me in the hip, and flame thrower on the top of my ankle. I thought I saw smoke a few times...(smiley face).

    Do you have this sort of pain? Electrical, burning pain. Knife stabs, jolts, and spasms?

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  8. #8
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    Quote Originally Posted by jborden View Post
    That is a really good suggestion Susan. I think it would be very helpful to realize how limited you were and be able to realistically gage your improvement/ success.
    Did you have surgery and if so when? If yes, are you better now?

    Thank you,

    Jenson
    Hey there Jenson, if you need great toilet time reading, check out my threads, especially the one about surgery w/ Dr. Hu in March 2013. Yes, I went to " hell in a hand basket".
    The Cliff Notes version is.....I am glad that I had the surgery in spite of postop problems. My oh, so wise and sage been-there-done-that perspective is that having major deformity spine surgery is like playing craps, except the player has the advantage and not the "house". Most surgeries done in a large medical center by the skilled hands of a well practiced ortho adult spine surgeon go very well and those folks go home happily ever after and only stop in on the forum occas, if ever again. A small number are the same as before surgery...a bummer. Then there are the folks that are worse after surgery whose pain and disability have increased. Fortunately, the last group is small, but membership in that group is everyone's nightmare.

    My suggestion: don't have surgery unless your quality of life is well compromised, get a couple of opinions, do your homework and vet the surgeon and read tons about the surgery, and do PT, acupuncture, exercising/swimming, eat well, get in great shape. If you decide to have surgery, choose a surgeon that you can trust and let go. Ask lots of questions, but finally just go with the flow and put yourself in the surgeon's hands.

    Best of luck.

    Susan

    PS: Am I better now? Both surgeons that I consulted said that if I did not have the surgery, I would be permanently in a wheelchair on Oxycodone. That would not be a pretty picture! So, yes, I am much above that.
    Last edited by susancook; 08-02-2017 at 04:14 AM.
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  9. #9
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    Ah yes, the stabbing, shooting pain that makes you shreak in pain out loud....

    Ed,
    Yes, unfortunately I do. It is awful but has gotten some better since taking the muscle relaxers. I had this awful spell of constant, involuntary spasms that came on suddenly. I wasn't sure what was happening but it was truly disruptive. I went to PT and they showed me quite a few great exercises that have also helped and expand the degenerative disc space. (or lack of space)
    Do you know anyone personally that was operated on by Dr. Hey? I have a good feeling with him but my mind just needs a little more proof to ease my ever fearing thoughts.
    I don't think I will be out of pain completely but I am hoping to be able to walk across the room without having to hold my breath to stand up straight. I find myself panting as I walk because I've forgotten to take a breath. My torso just gets so heavy and my left ribcage is now laying sideways and sits on the hip bone. Because the spine has twisted as it curves it caused the ribcage to do this.
    See images below and tell me your thoughts please.


    Take care~
    Attached Images Attached Images

  10. #10
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    Jenson, if I would have seen your x-rays before, I wouldn't have asked about your pain. wow! It looks like it really hurts.....your poor thing. Its awfully difficult to convey feelings on a forum, but I can see that you do have a serious lumbar situation. You have been told this if seen by any doctor, so at least I am not breaking any ice here. Its something we accept I guess...or try to anyway. Your not the only one.....

    I personally don't know any of Dr Hey's patients, maybe someone here does.

    Did he ask you why you waited so long? I ask, because I was asked this a few times by my surgeon.....For those reading here that have roughly 50 degree curves at around age 40, that's the time to go see a scoliosis surgeon again and start thinking about things. Its not good to ignore our curves as we age because degeneration can take a foothold and complicate matters. You know that as elder adults with degenerative curves that our decisions are based on pain. Many of us hung in there like you for a long time and basically gave up. There is only so much pain one can handle. I was rejected and then I begged. I was guaranteed that something would go wrong, but I had to take that chance. Its not an easy thing to do, so you know how much pain I was in. In the end, my surgeon told me that it would help. It would be an improvement even if I ended up having permanent pain, hopefully, the pain would be less.

    What did Dr Hey say? Did he say it would be an improvement? Would he do a single procedure or a 2 stage?

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  11. #11
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    Pictures tell the story a lot clearer!!!

    [QUOTE=titaniumed;169651]Jenson, if I would have seen your x-rays before, I wouldn't have asked about your pain. wow! It looks like it really hurts.....your poor thing. Its awfully difficult to convey feelings on a forum, but I can see that you do have a serious lumbar situation. You have been told this if seen by any doctor, so at least I am not breaking any ice here. Its something we accept I guess...or try to anyway. Your not the only one.....

    Ed,

    Dr. Hey asked me how my quality of life was. Of course my response was "pretty crappy!" He said that if that was the case than he would highly suggest we improve it. He was confident that we could make things better. He has seen and operated on worse and had good outcomes.
    The reason I waited as long as I did was primarily due to doctors telling me that no one would touch my spine and I could end up paralyzed.(my biggest fear!) This was from basic orthopedic doctors and not spine surgeons / specialists. So I thought they knew what they were talking about when in fact they should have been sending me to these specialists for their opinion. So when the pain was controlling my life and I was not able to concentrate on my work or sit at the computer for any length of time or walk across the room without holding my breath to keep my torso up, I decided to find out what, if anything, was out there to help. I don't feel that I have a choice anymore with the progression over the last year and half. Because of the degenerative discs and severe facet arthritis things have really deteriorated quickly. SUCKS!!!!!!
    So you still have pain? How does it compare? Also, do you use an incline table or does that help after surgery? Is there something you'd suggest to help recuperate after surgery, like exercise equipment?

    Thank you for chatting with me. It means a lot to me to have people to ask these questions to that I know understand....

    Take care!

    Jenson

  12. #12
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    Scoliosis sufferers need to see scoliosis surgeons period. Children and adults, all ages, regardless of if they are having surgery or not....Just because you go in for an evaluation doesn't mean you are having surgery, but at least you have peace of mind knowing that you don't have a tumor or cancer or a Gibbus deformity or devastating kyphosis or any other things that others will and can miss that can present compounding problems down the road. As we age, we have degeneration, and possible cancer to worry about, osteoporosis, etc and all the other doctors or health professionals need to simply point us in the right direction if its out of their league. Most of the times, it really is out of their league. (Smug face) Many of the elder scolis here know what I am talking about as we have been around the block a few times with doctor tours.

    Its good to hear that Dr Hey is confident with your situation and can offer improvement. This is a really good sign....You "could" get a second opinion possibly from Dr's Lenke, Errico, Schwab,Lonner, or others at HSS in New York for peace of mind if you like.....but if Dr Hey feels confident, I don't think its necessary. If you feel good about it, that's what matters. Dr Hey is an accomplished scoliosis spine surgeon.

    My lumbar situation was also complicated, I waited and yes, it made surgery more complex....It required a very large front side operation (ALIF) and yes, it was a dangerous procedure. My surgeon and I discussed possible complications over several sessions, it can be an overwhelming sort of thing absorbing all of this, but we need to be informed. Through all of this, I thought why do I have to do this? The why me question surfaced again in FULL force, and it was a depressing sort of thing but what can we do? I had no choice and if I had no choice, I had to pull my boot straps up and focus on my long term recovery goal with a positive attitude and full 100% commitment. I was jumping in the deep end of the swimming pool. My time arrived after waiting 34 years. We are scoli's for life and scoliosis surgery recovery takes many years in adults over 50. There are stages of varied pain, different types of pain's and feelings of tightness and so forth.

    It took me a few years to believe that I came through so well and I am the luckiest person here on this forum, I wouldn't have made it without my surgeries and am forever grateful. Surgery saves lives, and I want to say do it, but cant since its our own very personal decision. Once one goes in, you cant look back. If something goes wrong, and sometimes this happens, lingering pain etc, you cant 2nd guess your decision, you move forward. Tarita in the 1962 "Mutiny on the Bounty" movie stated an old Tahitian saying "You eat life, or life eats you" is something I try to think about each day growing older. My spine is fine, the rest of my body is falling apart now. I try to joke about pain when I can....laughter therapy and that attitude is quite helpful, it keeps me going.

    Incline table? No.....I am fused now, doesn't make any sense. De-weighting is a great concept....Traction sometimes works and sometimes it doesn't. De-weighting for pre-surgical patients in the ocean is fantastic and its also free. They have fantastic wreck diving out of Morehead City, North Carolina....(smiley face) Some of the best in the world....

    I personally wouldn't buy anything other than a 4 inch latex foam topper for the bed and maybe a grabber or BBQ tongs. My insurance company gave me my grabber. I didn't buy anything leading up to my surgeries but I am the Oscar Madison of scoliosis recovery....(smiley face) Your husband can get the things you need as you go.

    Hot water works great for pain.....I cant overstate this. Having a large tub for scoliosis recovery is a good thing. If one wants to spend a little chunk of money.... install a large master bath tub. Wide and deep. This also improves the house value. I wouldn't have made it without my large deep master tub. Get a doctor to approve this before in writing so you can use this as a tax deduction with IRS. Install a new large water heater while doing this upgrade. Water heaters take a dump around 10 years....they are just like our spines, with calcification and so forth. Funny stuff.

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  13. #13
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    Jensen,
    I sent you a PM replying to a question you had for me on a different thread. It is a shame that the orthopedic surgeon gave you such bad advice instead of sending you to a scoliosis specialist. Dr. Hey is confident that he can improve your quality of life. I trusted Dr. Lenke enough to take the plunge. I wasn't in much pain, so it was a hard decision to have surgery. Good luck!
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  14. #14
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    May 2010
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    Hi Jenson!

    Hi Jenson, Your post caught my eye because I just had surgery with Dr. Lenke only 3 weeks ago. Iím so sorry for what youíre going through. I just wanted to reassure you that it isnít as bad as what you are most likely thinking right now. I saw all the top doctors in NY and did a lot of research. Like everyone else, I questioned myself and went through all the typical stages like the why meís. However, if youíve done your research, asked all of your questions and seen all the doctors you want (Scoliosis Surgeons only) then the decision becomes clear. If they tell you this is the right thing to do, then listen to them, they are the experts, and deal with whatever the outcome may be when you wake. Everyone is scared of a bad outcome, but I believe if you have a good surgeon, it is extremely rare and not something to worry about (like the risk of flying, driving, etc. they are risks taken everyday because it is the right thing to do.) The risk of not having surgery is a known, it will get worse and fixing it at an older age will also be worse if at all possible.

    Before making my decision, I would cry and try my best to think of a way out of it, but there just isnít. I thought, how can all these people just walk into the hospital and say do this to me. I didnít think I could and was going to just let it go even knowing Iíd be in a wheelchair someday and loose bowel and bladder control. I was that scared. However, itís one step, one appointment, at a time before surgery and the more of those steps you take to get there the calmer you begin to feel.

    Iím 52 and was fused T3-Sacrum, a couple of cages, and 5 osteotomies. My curves had progressed from 25* to 73* and something else I donít remember. My rib hump grew huge and I was in a lot of pain. I couldnít walk or stand for more than 5-10 minutes before pain set it. I had scoliosis, kyphosis, stenosis, lateral listhesis, degenerative disk, and arthritis. I thought the pain after surgery would be unbearable. There were a couple of times in the hospital that it was, but they fixed it with meds, which is incredible to me.

    Itís amazing that all these years of pain and worry about what to do are now over and were pretty uneventful! I canít tell you how nice it is to have it over with! I had to give up a lot, but I hope to get most of it back and be even better. Although in pain, I lifted, it was my hobby. I really enjoyed looking and feeling like an athlete instead of someone with a debilitating, painful problem. People even thought I was a body builder. They didnít know and I liked it that way. Actually lifting didnít hurt so much, but standing and walking did. Anyway, my point is I hated giving up what I worked so hard for. However, Iím only 3 weeks out and Iím so glad I did it! The fear and that horrible decision is over!

    Iím so fortunate to have had one of the best spine surgeons available and Iíve read about Dr. Hey also. If I were in NC Iíd go see him.

    I wish you the best. It really is not that bad. Itís over quicker than you can imagine and for me now its just some small thing I did thatís come and gone.

  15. #15
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    Jenson,
    I just read Ripley's post and I think it could have been written by me 6 years ago. I was petrified of the surgery and couldn't even imagine rods and screws in my back and that a normal life could be possible. I am so thankful that I didn't listen to well meaning friends who thought elective back surgery of any kind would be disastrous. Thankfully, I listened to Dr. Lenke and people on this forum and made the decision to have surgery. I gave up my normal lifestyle temporarily and now have 100% of my life back, only I have a straight back and no rib hump. I no longer have to fear what would happen if I did not have surgery and my spine's curves continued to increase. I see my 96 year old dad with scoliosis and know how much pain he is in.
    I play golf 5 days a week and enjoy tap dancing, bike riding, and walking my dog. The worst time for me was before the surgery. Recovery is not easy, but for me, it was so much better than I had feared. I have read good things about Dr. Hey. I am hoping for the best for you.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

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